Late latest update

Sorry for not posting earlier. I'm not even creative enough to use "brain tumor" as my excuse.

Wednesday was my meeting with Dr. B to talk about where I stand and to start the chemo trial again. Essentially the results are pretty promising. Most of the tumor was surgically removed (the new UCSF computer system is not quite reliable yet, so I didn't get to actually look at the latest MRIs). A small portion of the tumor remains, and word on the street is that Dr. Berger left it there in order to save my vision. As some of you know, I've lost some peripheral vision as a result of the past 3 brain surgeries. The best news was that tests on the surgically removed tumor showed that about 20% of it had already been killed by the chemo I was on for a week! Needless to say, I was excited to start the chemo again.

Beyond that, it looks like the vision loss is really permanent, since it's not happening at the processing level, but at the actual optical nerve. Luckily it's a region that I've only noticed when mountain biking, and I'll learn to adjust.

Amazing weekend!

Sorry for the late entry, but I was flying pretty high after this weekend. The Huck Cancer event was fantastic! Thanks again to...well...everyone! Family, friends, ultimate players, survivors...everyone! Ok, how many exclamation points can I use. Well, whatever! As my friend H-Lo might say, "!!!!!!!!!!!!!!!!!!!!"

In many ways it was better to be pulled from the roster and have to "sit" on the sidelines. I got to heckle...er..."watch" so many more people, including my brother, sister-in-law, and nephews. I really want to thank my wonderful friends who helped organize and run the event (you know who you are, and so do I). Pictures are trickling to the Huck Cancer Facebook page and eventually to the website. We also had the head of the Grassroots department at LIVESTRONG stop by, so we forced him to play. He had such a good time that he's promised to bring some more people next year.

Of course, not all of the news was fantastic. A few of my friends were there in honor of loved ones that had recently passed away from cancer. As I've talked about in the past, sometimes I think it's a lot harder to love someone with cancer than it is to have cancer. I think, and hope, that this event helped ease some of the pain.

In the rest of the news, I had my staples removed on Monday, a couple days earlier than I expected since I had to go in there anyway for a blood draw. While there, I gently asked into which parts of my life I can try to step back. Essentially, it sounds like I can gingerly try starting with the basics, and if nothing bad happens (i.e. if the surgical area stays solidly stuck to my skull), I can take the next step. So...today I went to work for the first time since the surgery! That was also wonderful. I'm not quite ready for a full day, but who's gonna complain about that. I also managed to get in some aerobic exercise and stretching, and that alone improves my energy and mood. As for the skull, still looks and feels the same!

Tomorrow I head in to get the detailed report from Dr. B and also re-start the chemo trial. I'll pass on that info as soon as I can. Meanwhile, as you can see, my brother and nephews (once they got here) decided to join in the fun....

I can finally show you all...

...the shaved head! I've been waiting for my brother and his family to get on the plane and ride out here to join in Huck Cancer so that I could surprise them with the "new look". If you recall, Andre Agassi was used historically as a benchmark to decide if I should shave my head or not. With each recurrence, I would once again raise the question, and every time my brother, out of solidarity, would shave his. Of course, his "solidarity" was very literal, in that I never ended up shaving mine. Until this week. And as it turns out, I do kinda look like cross between Andre and my brother.

You also get to see my lovely, puffy face from steroids. Gotta take advantage of this, so I'm headed off to join the NFL!

Familiar for me, but not for others

I just need to vent a little frustration with brain cancer. Right now, at this moment, I'm basically going through a somewhat similar recurrence as I've had the last 3 times. It's mixed in that of course I'd love not to have any recurrence, but I've also been keeping track of some of my "survivor" friends, and they are having their own, more difficult, challenges at this point. It reminds me of how miserable and frustrating this entire situation can be. We love to try to come up with reasons (cell phones, diets, genetics, etc.) some of which might have slight validity and all of which add to the illusion of control. But if we had control, then I know these friends would NOT be suffering right now. They are too wonderful to deserve this for any reason, and they are fighters. There is no obvious "causality" as there is for some cancers like lung cancer (and yes, I know I'm potentially shaking up a "cell phone" argument with others - but remember, I'm a physicist). There are currently some new paths to treatments and cures that are going well, but slowly. And there is frustration.

Yup, it all looks familiar

The situation now does seem a little bit like a repeat performance. Things are so far progressing steadily. I don't have any particularly severe pain, and my energy is increasing day by day. I'm still napping away most of my days, and my throat is still recovering from the tube that was stuffed down in during the surgery, but other than that, I can't complain! My sister and mom are taking wonderful care of me as expected. They are headed back home on Monday, so I'll be open for even more visitors then! Thanks to all who have sent kind wishes and treats to keep me pushing through.

Oh, and it's 45 this time. The contest is getting boring....

Quick status report

All is well. Lil mom and I just left Eric sleeping pretty soundly after the operation. Dr. Berger was quite pleased with the surgery and said he "cleaned him all out.". Given Eric's amazing recuperative powers, we expect to see him up and about and begging to be discharged within a day or so. Thanks for all of your support!

Here we go...again.

The MRIs, MSIs, fiduciaries, blood tests, and the last round of chemo have all been taken care of today. Tomorrow, it's surgery time. The chemo was relatively benign as far as side effects are concerned. It does beg the question, "Is it doing anything?" But let's leave that for another time. For now, may the surgery succeed in removing the two growing areas, and may I recover rapidly and with no issues.

And a big shout out to my wonderful family and friends who are once again stepping forward to make this process tolerable, and occasionally enjoyable!

Let...the chemo...BEGIN!

Just had my first pill (and my 2nd, and 3rd, and 4th, and, yes, 5th) today after finally nailing down the date for the surgery. February 21st. No obvious side effects yet!

For this surgery I'll get to sleep in until...oh...8:00 before heading over there. My mom and first-born sister are coming out Sunday to take care of me. I still have some questions for the surgeon, and am hoping I'll actually get a chance to ask them before actually going under the knife.

Time flies when you're fighting cancer

Since the diagnosis on Wednesday, things have moved pretty quickly. There's an opening in a Phase II clinical trial for which I actually qualify! (Kinda feels like applying for a job). Since I did the vast majority of my research when the recent "quasi-tumor" image appeared, I know that there are several trials of the radical approach for which I do NOT qualify. ("I'm sorry, but we're looking for someone a little more....") Of course, as a scientist I do want to dot all the "i's" and cross all the "t's" (and annoy all the docs). But assuming my path continues in the direction of the UCSF clinical trial, I'll be starting the drug either Tuesday or Wednesday of the coming week, and diving into surgery 7 days later! The main concern about the surgery is that there's a chance that my vision will be slightly damaged, based on evidence acquired from the "awake surgery" I went through last September. Yes, there will be many more questions and discussions with the docs, but at this point they will likely influence the emotions more than the decisions....

3rd time wasn't a charm....

Unfortunately, I'm not really out of the woods. The results today were not so good. The "stable tumor" I'd previously mentioned looked like it grew a little bit more. Worse yet, a completely new tumor was discovered, and is likely growing fairly rapidly. So...what's next?

I basically have the choice between standard care and clinical trials. It appears that all of the standard care can be implemented if a clinical trial "fails", so of course I'm leaning towards starting with clinical. The other option is whether or not I go through another surgery, which seems to be a personal choice. And personally, while they are kind of miserable and definitely take a page out of my life, I still find myself attracted to them, my own special love/hate relationship.

There is a particular trial suggested by Dr. B that might be the best option with which I qualify. It is a Phase II study using PLX3397 as the chemo treatment. I am also checking with Dr. Rudnick for a 2nd opinion and to discover what other options might be available. That said, I did research several options for the "stable tumor" and found that I didn't qualify for most of the radical trials given its location. Since it hasn't moved as much as it's spread across the pond, I'm guessing I still don't qualify for those trials and so don't have a lot of searching to do.

I am unfortunately likely to miss out on the Huck Cancer ultimate tournament - and might even be in the hospital when it's happening on March 3rd - but still want people to sign up or donate for the cause if you can!

http://www.huckcancer.org